Action on Postpartum Psychosis

Hello I'm new to this!

Hi everyone, hope you're all having a nice weekend. Long post alert sorry!

I'm a mum of two girls - one of six and one of six months. I recently spent six weeks in a Mother and Baby Unit after a severe postnatal illness, for which I never actually received a clear diagnosis, so I may not be posting in the right place. I'm also blind, and manage my disability pretty well, put it this way, it has and never will hold me back.

My mental health on the other hand, is a very different story. I first became unwell when my eldest daughter was about 3 months old. It started with me hearing something odd in her voice whenever I fed her formula, but nobody believed there was anything wrong. The situation got worse and worse for me, climaxing in a full-scale meltdown where I believed she was seriously ill, deaf mute and would not last the day. I rushed her to the doctor, who said she was absolutely fine, but I didnt believe anyone, and thought the whole world was against me. This belief lasted for about a year, during which I didn't receive any proper treatment other than some weekly counselling which I organised myself. I spent six months going through what felt like torture, thinking my daughter would be snatched away by some horrible illness, and that her supposed deafness would prevent us from communicating with one another for life. My anxiety was sky-high, and I definitely felt depressed as well, at times feeling like I couldn't go on anymore.

It seems completely ridiculous to me now that I ever believed all this, as she is one of the biggest chatterboxes in history, and is bright as a button.

Although I was petrified of becoming ill again, I tried really hard to put measures in place to prevent another episode of mental illness. I mentioned it at every midwife appointment, I notified my GP, I spoke to basically everyone associated with my antenatal care, as well as to my counsellor and got support organised from Homestart, to try and take the pressure off. My parents also came up after the birth to help in the house, so I basically didn't have to lift a finger, all i had to do was eat, sleep,breastfeed and change nappies.

but I let things slide, I stopped eating properly, I couldn't sleep, I started obsessing and worrying about whether my baby would be allergic to milk like her big sistr, and when it turned out she was, I panicked and started expressing round the clock to try and make sure she had only my milk. I must've baught about ten breast pumps by the time she was 3 months old, and I was spending up to 12 hours a day pumping, forgetting to bond with her, forgetting to cuddle her, to play with her, to nurture her. I still thought I was coping, I still thought I would be OK.

but one day I just woke up and couldn't stop crying. Then the terror came out of nowhere. Complete and utter terror of I didn't know what, that paralysed me and made me feel like I was going insane. After that came loads of changes in mood. One minute I was fine, then the next minute I felt like i was dying. The world turned into this underverse, where anything was possible, it was like a living nightmare. I started having almost constant vertigo, I stopped sleeping and couldn't eat, I started to feel like I was disappearing into a dream-world and that I'd never come out. I felt physically unwell, and just couldn't stop shaking, crying and was physically sick as well. In short, I felt like I'd been hit by a train and had wound up in hell.

I eventually went to the GP, got sent here there and everywhere for assessments, culminating in admition to the MBU. I spent three weeks getting worse, then three weeks getting better. At my worst, I was hearing scrambled voices whispering indecipherable messages each night, I was plagued by a constant buzzing and whirring noise that followed me around everywhere and sounded like the soundtrack to a horror film. I was seeing flashes of light every time someone spoke, and I felt like I was on a constant rollercoaster, which made it really hard to walk anywhere properly. I also believed I had a rare pryon brain disease that would eventually prove fatal, so I may as well do the worst before it clamed me. They put me on Sertreline and a small dose of quetiapine, which made everything worse at first, but I'm glad to say I eventually hit rock bottom and bounced back up.

I've been at home now for about six weeks, and I feel loads better, as well as having forged a wonderful bond with my little baby girl. These MBUs are priceless, and I wish every mother who needs it could receive treatment in one, it just isn't fair.

I guess my reason for posting on here is to try and connect with other mums who've gone through a life-changing experience of a similar magnetude. although I feel loads better, and am functional and stable now, I often feel overwhelmed by the memory of what happened to me, and am terrified one day it'll happen again. Please excuse the massively long post, and appologies if I'm posting on the wrong forum.

Hugs to all you amazing mummies,

sal x

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Hello Saloire

Thanks for sharing your experience and I'm sure this is the right place for you as it sounds as though you suffered PP. You will find lots of support and shared experiences here. I'm glad you received the specialist care of a mother and baby unit and hope you are settling in at home.

I had PP many years ago and received treatment in mixed general psychiatric units. I was plagued with similar thoughts, delusions,hallucinations which were all very frightening and so well described by you as a living nightmare. Like you I didn't know my diagnosis at the time but years later I contacted Prof Ian Jones of APP via an article in the local press regarding research. I then met him and some of his team and after sight of my medical records he was able to confirm that I had suffered PP after my sons were born. This was such a relief in a way as I had wondered about my odd behaviour for years.

PP is a very overwhelming and hard to come to terms with at first. I felt as if I was a completely different person when I heard about some of my thoughts and delusions! I think as time passes and you eventually fully recover the memory of what happened to you will fade as it's replaced by all your happy family memories. Some mums here have had further pregnancies without PP returning so try not to worry.

You might find APP's frequently asked questions page helpful at app-network.org/what-is-pp/... where you will also find personal experiences until other mums reply here.

It's early days in your recovery so please try to rest as much as you can, perhaps sleeping when your baby sleeps? You have been through so much and it's good that you are feeling better but don't rush to be well as you need to give yourself time to heal.

Take good care of yourself ..... we are all here to support you so never worry how long or short your posts are :)

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thank you Lilybeth, it's reassuring to know I'm not the only one, but I'm sorry anyone has to go through this awful living hell that is PP.

You're right about not doing too much, and I'm definitely guilty of trying to pretend everything's all fine when I've clearly got a long way to go. as for having another child, there's absolutely no way! Two children are quite enough for me!!!

anyway thanks again,

Sal x

anyway

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Dear Sal

I just wanted to pop on and say a big Hello/Welcome and to thank you for sharing your story. I have huge respect for anyone managing both a disability and motherhood, and have no doubt in the slightest that it doesn't hold you back at all!

It's great you are making such a sure recovery already. Horrific that we have to hit that scary rock bottom place, in order to start to bounce back up, but that seems to be the way of Postpartum Psychosis.

I'm not at all a medical professional but it does sound from your story that perhaps you suffered from PP after the birth of both your babies. Sadly, when you have it once, you are at vastly increased risk of having it again - so I'm sorry your healthcare team weren't more prepared. Although fantastic that you got the MBU care in the end - it is such a postcode lottery still!

Very best wishes for your continued good health and recovery,

Kat x

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Thanks for sharing your story with us. Yes! PPP is best described as a living hell. I can identify so much with the feelings you shared. Just wanted you to know you aren’t alone. It’s an insane nightmare. Wishing you well,

Kar

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Hello Sal,

thank you for opening your heart about your experience. It is incredible how much one has to fight when confronted with traumatic encounters and having to cope with challenges and frightening hallucinations whilst suffering from PPP or other mental health illnesses/conditions. Whether being undiagnosed or falsely diagnosed as in my case, it could cause a lot of upheaval and unnecessary slow down for recovery.

You have done so exceptionally well, but please do not forget to be kind to yourself.

I am still working on my recovery of fear and anxiety, because of the treatment I have received when sectioned to a psychiatric mixed gender unit. It was "unreasonable & unacceptable". Yes, I recovered from PPP, but emotional scars may take some time to heal! One of the reasons why I find it so important that awareness raising of mums and mental health issues is of vital importance.

Luckily we are moving forward and MBU's are coming to my area, too.

Remember all in stepping stones. You are an exceptional mum.

Sending you a virtual hug.

x

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Hello Saloire

I hope you are continuing to feel better and the shared experiences were helpful.

Take good care of yourself. xx

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Hi everyone,

sorry it's been so long since I replied to all your lovely responses of support, I'm having problems accessing most of the Health Unlocked stuff using my screenreader. I can see everything, but it won't let me click on it for some reason, really annoying.

Anyway, just thought I'd give a quick update. Things are significantly better since I was discharged from hospital, and the majority of my vertigo and auditory halucinations are almost completely gone, which is amazing considering how severe they were before.

I'm still struggling with near constant exhaustion, and this is taking its tole on my relationship with my partner, who has told me he's feeling the pressure braught about by my sleeping in and neglecting the housework. I must point out that I only ever sleep during the day when my baby sleeps, and pretty much do all her childcare myself, something I have done since leaving the MBU back in August. He is very good with our six-year-old,and most of the time I only have to read her a story and cook her dinner, as he does so much with her the rest of the time.

The worries for me at the moment are: 1. whether the meds are either causing or adding to my exhaustion; 2. How to get my partner onside as regards my recovery without putting undue pressure on him; 3.How to manage my intrusive thoughts and feelings related to my time in the MBU. It sometimes feels like the smallest things can trigger a memory or a horrible feeling which reminds me in seering clarity of the hell I went through in there; 4. How to rebond with my older daughter. although we still get on great, I sometimes feel a sense of disconnection from her, because she's become so close to her dad since I went into hospital, and I would love to have the energy to do more for and with her.

Anyway, if you got to the end of that then well done Lol. Hope you're all doing well.

Sal xx

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Hello Sal,

it is lovely to receive post again from you. Thank you for your up-date. Yep, it is amazing how much we rely on technology...I would not like to be without it, - I use it as an educational platform and of course the forum.

I am pleased that you are feeling better since returning home. I struggled with auditory hallucinations for quite some time. My partner and I realised that it related to stress levels. I have had the bells ringing, but can reassure you that they are not there anymore :-) It is of great relevance that you highlight your points of struggles and difficulties. It is such a big transition from hospital to home. Do you get professional support?

I usually do not compare, but I am so amazed how well you are doing, because you manage to look after your little one and doing all the house work. In the first 6 months my partner was my full time carer and had to look after me and the baby.

Obviously the situation has changed for all of you and responsibilities have shifted. It is so difficult to suggest a sensitive approach, because partners and husbands have gone through such an upheaval as well. Communication maybe a bit more difficult for you, because of your meds, side effects, especially exhaustion...your body is still healing, your soul is vulnerable and one needs a lot of rest.

Do you have carers support within your locality. My partner had some help whilst I was so poorly, but usually was very busy with trying to teach me the basics again and eventually looking after my baby, by then probably already 6 months old. My partner has had family support and some friends he could rely on. We followed a care plan with professional support.

I am not sure about counselling opportunities for you and your partner. My partner accessed counselling via his company. Union do offer this, too. GP could help, although there is a waiting list for prescribed counselling.

Would you be able to consult a Health Visitor in order to discuss issues. Mine was of great help with life management and how to look after our baby. She supported us for 2 years. In addition we have had a Psychologist, who taught my partner how to wean me off with the medication.

I wonder whether you could join any mum and toddler groups run by Sure Start or other organisations within your region. I shared some of my worries with Educationalists on a one to one basis.

There has to be room for you, too in order to emotionally bond with your bigger daughter...but remember, sometimes it has to be all in stepping stones. You may could say to your partner, that you would like to share some activities with your daughter, so that you gain more confidence again or even try and focus on some quality time as a family such as walks, swimming, playing games and loads more. Forcing an issue does not help, but creating a natural environment for everybody involved.

Anyhow, I've got to go as I need to take care of myself. Yoga after quite some time off. My son has been poorly and just gone back to school this week. Thus, I will focus on your meds and intrusive thoughts another day, but I am sure there are other mums who can give you some good guidance.

Look after yourself,

:-)

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Dear Sal

It’s great to hear from you, and how well you are doing. It sounds like the main issues around the distressing hallucinations are well under control, but now comes the hard business of long term recovery and recuperation... easier said than done!

Depending on your medication, then yes many of them can make us drowsy - especially in the morning. For me I had to take my antipsychotics so early in the evenings, in order to have any chance for functioning the next morning. But of course that meant that I lost my nice long evenings (which prior to being unwell was the time I would naturally do housework, catch up with my husband etc etc). It’s a really tricky balance.

As for relationships with your older child, I don’t have any direct experience to share here - but it sounds again like you are very much on the right track! I would look into booking some fun activities in for you to enjoy together, without the baby, and then also some special time with your partner too... You should celebrate all that you have both achieved!!

Continued best wishes

Kat xx

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